Data Privacy Day 2025: Building Trust Through a Societal Compact for Health Data
Health data has massive potential to drive research, improve healthcare, and create groundbreaking treatments. But with that comes the responsibility to protect patient privacy and build trust. On this Data Privacy Day, it’s worth considering how to balance progress with the safeguarding of data.
A Societal Compact, discussed in the ‘Proposing a Common Basis for Health Data Access Across Europe’ report by The Digital Health Society, offers a path forward. By prioritising privacy, trust, and fairness, it provides a framework for using health data ethically.
Sara Boltman, Director at Butterfly Data, contributed to the report, emphasising that privacy isn’t just a checkbox but the foundation for trust and ensuring health data benefits everyone.
What is a Societal Compact all about?
A Societal Compact is fundamentally a social agreement. It’s not about rigid laws or lengthy legislation. Instead, it is a flexible, voluntary pact between governments, businesses, researchers, and the public, to work together for the greater good and social benefit.
Two key ideas underpin the whole thing:
Privacy: People need to trust that their data is being handled safely, responsibly, and transparently.
Reciprocity: If organisations or companies benefit from using health data, they should give something back to society. This could be something like funding public health projects, improving services, or sharing research outcomes openly.
It’s not just about using public health data for research but about making sure the benefits of this research are shared fairly across society.
Why privacy and trust are a big deal
One thing Sara Boltman, and the wider working group for the report, are very clear about is that privacy isn’t an afterthought. It is the foundation of any trustworthy societal contract.
A Compact encourages openness and transparency, so people know:
Who is using their data
What is being done with it
How it is being protected
This kind of honesty is crucial because most people are already a bit sceptical about how their data is handled.
The report also points out that public input is vital. If a Compact is created without involving the public, it risks losing credibility before it even gets off the ground.
More than just following the rules
What is refreshing about a Societal Compact is that it goes beyond just meeting legal requirements like GDPR. Privacy here is about more than compliance; it is about fairness, respect, and accountability to build trust without shutting down innovation.
Some ideas from the report to make this happen include:
Having organisations fund public health programmes or invest in data infrastructure as a way to give back
Creating clear rules to stop things like data being used for discrimination
Sharing research results openly so everyone can benefit
The report also talks about using advanced safeguards, like pseudonymisation, differential privacy, or homomorphic encryption, to protect sensitive data.
Why it matters on Data Privacy Day
Data Privacy Day is a reminder of just how fragile trust in data systems can be. It takes years to build, but one breach or scandal can shatter it overnight.
A Societal Compact is a possible way to address this by opening data up in the right way, with proper safeguards, so it can deliver real benefits.
If your organisation needs help building privacy systems, anonymising data, or reducing risks, the team at Butterfly Data is here to help.
